Health Disparities: Weaving a New Understanding Through Case Narratives

By Adam Perzynski

This uniquely accessible volume challenges professionals to understand—and help correct—health disparities, both at the patient level and in their larger social contexts. Dedicated to eradicating this ongoing injustice, contributors focus on marginalized populations, the role of healthcare systems in perpetuating inequities, the need for deeper engagement and listening by professionals, and the need for advocacy within professional education and the political/policy arena. The compelling case narratives at the core of the book illustrate the interrelated biopsychosocial components of patients’ health problems and the gradations of learning needed for practitioners to address them effectively. The book’s tools for developing a health disparities curriculum include a selection of workshop exercises, facilitator resources, and a brief guide to writing effective case narratives.

A sampling of the narratives:

• “Finding the Person in Patient-Centered Health Care” (race/ethnicity/culture).
• “The Annual Big Girl / Big Boy Exchange” (gender).
• “Just Give Me Narcan and Let Me Go” (poverty/addiction).
“Everyone Called Him Crazy” (immigration).
• “Adrift in the System” (disability).
• “Aging out of Pediatrics” (mental illness and stigma).
• “Time to Leave”  (LGBT)

A work of profound compassion, Health Disparities will be of considerable interest to researchers and practitioners interested in public health, population health, health disparities, and related fields such as sociology, social work, and narrative medicine. Its wealth of educational features also makes it a quality training text.

"I was impressed when I read Health Disparities: Weaving a New Understanding through Case Narratives. As a patient who has experienced unpleasant situations in health care, I was moved to see that it was emotional and personal for the writers. The book confirms for me that the time is now for change to take place in our health care systems. I see this book as a light that can shine bright in the darkest places of health care. The editors have assembled a powerful book that provides all health professionals with specific steps they can take towards addressing and then eventually eliminating health disparities. A few steps that I really connected with were improving critical awareness, delivering quality care, listening and empathizing with patients and families, and advocating for changes. I recommend that anyone interested in working to improve health care obtain a copy of this book—it’s filled with useful information that every medical professional should know. The book reminds me of a quote by Wayne Dyer, 'When you change the way you look at things, the things you look at change.'"

-Delores Collins, Founder and Executive Director, A Vision of Change Incorporated, Certified Community Health Worker. Founder of The Greater Cleveland Community Health Workers Association.

 

• Language: English
• Publisher: Springer
• Release date: Jul 25, 2019
• ISBN: 9783030127718

Book preview

© The Author(s) 2019

Adam Perzynski, Sarah Shick and Ifeolorunbode Adebambo (eds.)Health Disparitieshttps://doi.org/10.1007/978-3-030-12771-8_1

Introduction

Adam Perzynski¹ and Francine Hekelman²  

(1)

Center for Health Care Research and Policy, The MetroHealth System, Case Western Reserve University, Cleveland, OH, USA

(2)

The MetroHealth System, Cleveland, OH, USA

Francine Hekelman

Email: [e-mail]

This book seeks to provide an initial framework for promoting learning about health disparities and social determinants of health among health professionals. In 2012, we began to teach health disparities to primary care physicians as part of a faculty development program. During the delivery of the health disparities component of the program, we developed a range of teaching strategies, curricula, and associated resources for promoting learning about health disparities among medical professionals. In this chapter we provide an overview of possible goals and objectives for a health disparities curriculum and an introduction to our pedagogical approach.

Background

MetroHealth Medical Center is an urban, county-funded, safety net public hospital and a Level I trauma center in Cleveland, Ohio. Since its beginning in 1837, MetroHealth’s constituents have disproportionately represented the poor, the elderly, people of many different races and ethnicities, and others from the City of Cleveland and Cuyahoga County who are in need of health care and often unable to pay. In addition, MetroHealth is known for a wide range of medical programs that treat patients with burns, kidney failure, tuberculosis, and HIV/AIDS and infants of addicted mothers, a physical medicine and rehabilitation department notable for care of spinal cord injury and traumatic brain injury and a bustling emergency room. MetroHealth is an affiliated Institution of Case Western Reserve University (CWRU). Narratives in this book draw upon decades of experience from clinicians caring for patients at MetroHealth and at many clinics, hospitals, and community locations in Cleveland and across Ohio and other areas.

The Department of Family Medicine at MetroHealth was the academic hub for educating three to four faculty scholars per year in an effort to develop basic knowledge, skills, and attitudes essential to medical scholarship. To this day, the overall curriculum of our training and faculty development programs consists of four primary courses including medical education, health disparities and social determinants, population health, and quality improvement. While this book relies primarily on narratives and innovations in health disparities education, we also experienced a synthesis from other collaborating educators in developing objectives, content, instructional methods, evaluation methods, and other features of the health disparities curriculum. Our work benefits most especially from the insights, writing, and ideas that come from faculty scholar learners themselves.

Goals of the Health Disparities Curriculum

The overall goals of the health disparities curriculum are similar to those typically found in undergraduate and graduate university coursework, and those are echoed here in this book. We review clinical cases together with social, political, economic, cultural, legal, and ethical theories related to health disparities in order to:

1.

Develop a nuanced understanding of causes of health disparities.

2.

Describe how health-care system and individual issues coalesce to create health disparities.

3.

Connect health disparities encountered in clinical medicine to broader social problems.

4.

Explore strategies for reducing/eliminating health disparities.

5.

Encourage scholars to learn self-directed positive habits of the mind in writing a case narrative on a specific patient with a health disparity or a specific social situation, thereby challenging the scholar to develop knowledge proficiency.

Preparation of a Health Disparities Curriculum

Preparation of materials for a health disparities curriculum presents a unique set of challenges. Existing graduate-level courses on health disparities, including one co-taught by Dr. Perzynski at CWRU, are targeted to an audience of graduate student learners who more often than not have little firsthand knowledge of health disparities. The situation is drastically different at MetroHealth where clinical personnel are confronted on a daily basis with adverse circumstances, including patients who live in poverty, are homeless, do not have health insurance or a regular source of income, and who come from a wide variety of diverse racial and ethnic backgrounds, many of whom do not speak English.

When planning our program in 2011, a search of the literature on teaching health disparities and social determinants of health to current and future health-care practitioners yielded few results. In the absence of a strong literature supporting educational strategies for health disparities in this audience, our approach was to rework the aforementioned graduate-level health disparities course by enlisting the input of the learners, the clinical faculty in the faculty development program.

Emergent Learning

Our emergent learning approach is adapted from the book, We Are All Explorers, which describes the Reggio Amelia approach to education that has been successful among young school children (Scheinfeld et al. 2008). According to the Reggio Amelia approach, people learn best when they explore a topic out of their own desire to know more about it. Thus, among our learners the curriculum is structured to elicit the scholars’ own experiences and concerns about health disparities first and then select readings and craft a set of activities on the fly. For example, in the introductory health disparities session it became clear that the seminar participants had a great deal to say about their direct experiences and frustrations with how broader social problems can become health disparities for their patients.

In response to this interest, participants were asked to draft case narratives of the social needs and disparities encountered by patients in their clinical practice. We designed a miniature curriculum that taught the scholars the principles of developing and writing case narratives with a focus on health disparities and social needs. The problem of not knowing the best ways to teach doctors about health disparities became the responsibility of the learners, and the process of learning about health disparities also became a process of collaborative learning of how to teach others.

In addition, the learners have gone on to develop and implement workshops and curricula for (1) teaching health disparities through narrative among Advanced Practice Registered Nurses via simple workshops; (2) promoting learning about health disparities among physician residents and trainees in a mini-course structure as part of residency; (3) developing curricula and materials for workshops at national health professional meetings, including one given at the 2014 Annual Meeting of the Society for Teachers of Family Medicine and another at The American Geriatrics Society Annual Meeting; (4) developing their own new health disparities courses in medical schools and clinical departments around the country; and (5) implementing dozens of new quality improvement and research projects focused on addressing social determinants of health in care processes and disease outcomes.

The case narrative approach provides opportunity for ongoing reflective critique and revisions. While the emergent learning approach has many advantages, on occasion the participants and the instructors struggled slightly with the loose, exploratory learning environment. For example, faculty scholars’ feedback indicated that they craved more structure in the curriculum, including a preference for more detailed and structured handouts. Thus, changes were made to supplement the open, seminar atmosphere with more detailed handouts and some other more structured activities including the viewing of videos on health disparities and visits by local health disparities experts.

The demands of health and medical training and the pace of work in clinical environments caused some participants to have difficulties fitting writing into their schedules. As instructors, we have found it challenging to provide timely feedback on the written cases prepared by participants. We worked to spend additional in-class time devoted to writing, and class time was occasionally traded to the scholars in order that they were able to spend additional time writing and revising their written case narratives. In all, the challenges of the emergent learning approach are more than outweighed by the benefits to the scholars’ learning and changes in attitudes about health disparities. The broad enthusiasm among the scholars for sharing our work on health disparities with local and national audiences has been particularly encouraging.

Objectives from Health Disparities and Social Determinants Narrative Workshops

In exchange for the opportunity to participate in learning activities, participants are expected to:

1.

Define and understand the nature of health disparities and social determinants of health as they affect patients and families of lower economic situations, patients of diverse racial and ethnic groups, and other disadvantaged populations.

2.

Learn how to prepare a case narrative of a specific patient based upon oral and written feedback from faculty and fellow scholars.

3.

Submit the case narrative for review and comment by the session leader.

4.

Present the case narrative to the class for discussion, clarification, and feedback.

5.

Revise the narrative and place it in his/her electronic portfolio.

6.

Evaluate what s/he learned from the case narrative and the presentation to the class.

7.

Commit to include the case narrative in future publications or presentations.

Evaluation and Outcomes for the Faculty Case Narratives Component

Over the last 6 years, hundreds of learners in our programs and courses have read, written, and/or presented a case narrative. Based on this writing, many have gone on to submit abstracts, give oral presentations, conduct workshops, redesign residency curricula, conduct quality improvement or research projects, and even develop new clinical and academic programs.

Each time such an occasion has occurred, scholars have discussed the presentation as well as the results shared by each of the participants through their evaluations and feedback. As we continued to develop the program, we realized that many of these narratives were useful teaching tools and could be adapted for other health professionals, especially if we developed a collection that included an array of tools and learning experiences. Our overall goal is to eliminate health disparities. The pathway to that goal includes a critical awareness of the problem, a desire to improve the quality of care delivered to individuals of disadvantaged backgrounds, and the skills and resources to help team members understand their role in listening and empathizing with patients and families, as well as documenting and advocating for changes in social determinants of health.

At the outset, we did not realize that our work would become a model for teaching diverse learners in a variety of settings. True to form in the Reggio method , we are all explorers, and the process of learning about social determinants and discovering how to best promote awareness of health disparities continues through a shared sense of responsibility to sponsor health and social equity. We hope that the gentle minds of everyone who reads this book, from learners to workshop facilitators and faculty, experience growth in learning and passion that spreads throughout medical schools, health professions programs, and health institutions. We as professionals have a need to understand the social and cultural implications of disparities and determine a plan of action to effectively address social determinants and eliminate disparities in care and outcomes.

Reference

Scheinfeld DR, Haigh KM, Scheinfeld SJ (2008) We are all explorers: learning and teaching with Reggio principles in urban settings. Teachers College Press, New York

© The Author(s) 2019

Adam Perzynski, Sarah Shick and Ifeolorunbode Adebambo (eds.)Health Disparitieshttps://doi.org/10.1007/978-3-030-12771-8_2

Health Disparities and Social Determinants of Health

Sarah Shick¹  , Ifeolorunbode Adebambo² and Adam Perzynski³

(1)

Department of Sociology, Case Western Reserve University, Center for Health Care Research and Policy, The MetroHealth System, Cleveland, OH, USA

(2)

Department of Family Medicine, The MetroHealth System, Cleveland, OH, USA

(3)

Center for Health Care Research and Policy, The MetroHealth System, Case Western Reserve University, Cleveland, OH, USA

Sarah Shick

Email: [e-mail]

It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.

There is no such thing as a single-issue struggle because we do not live single-issue lives.

–Audre Lorde

The narratives in this section are written by fellow physicians, nurses, and social scientists to demonstrate how health disparities influence care and create challenges for providers and patients alike. As the above Audre Lorde quotes suggests, recognizing and accepting the diverse, layered experiences of patients can lead to better care and a better experience for all involved.

In a story similar to one of the patients featured in the following narratives, Audre Lorde gained fame for her writings exploring on her experience as an African American lesbian with cancer and how it affected both her medical care and her interaction with the world. A thorough understanding of health disparities and the social determinants of health begins with some basic definitions.

Healthy People 2020 defines a health disparity as:

a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion. (Healthy People 2020 2018a)

The Kaiser Family Foundation further clarifies the difference between a health disparity and health-care disparity:

Health disparity: A higher burden of illness, injury, disability, or mortality experienced by one population group relative to another group.

Health care disparity: Differences between groups in health insurance coverage, access to and use of care, and quality of care. (Orgera and Artiga 2018)

The American Association of Family Practice (AAFP) has provided an important toolkit on the social determinants of health via the Everyone Project (Crawford 2018). The AAFP provides a simple and clear definition of social determinants:

The conditions under which people are born, grow, live, work, and age. (AAFP 2018)

Healthy People 2020 offers a similar definition:

Social determinants of health are conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. (Healthy People 2020 2018b)

Social determinants can be further organized into five areas: economic stability, education, social and community context, health and health care, and the neighborhood or built environment (Healthy People 2020 2018b).

Example Data on Health Disparities

Health disparities are common and vary widely from place to place and across time periods. It is important to remember that disparities do not affect only racial and ethnic minorities but can impact any population depending on the health condition and other factors at play.

Healthy People 2020 provides an excellent online data resource for anyone interested in examining health disparities data across a wide array of social and demographic characteristics combined with disease and health-care process metrics. The DATA 2020 tool (https://​www.​healthypeople.​gov/​2020/​data-search/​health-disparities-data) allows users to select a particular group characteristic (e.g. disability) and a particular outcome or process (e.g. health communication). In Figs. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, and 13, we present several examples of health disparities data across time and by subgroups. The web-based tool also allows users to narrow their data to individual states. Data are drawn from national health survey and surveillance resources like the National Health Interview Survey and the Medical Expenditure Panel Survey.

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig1_HTML.png

Fig. 1

Age-adjusted cervical cancer deaths per 100,000 population by race/ethnicity, 2007–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig2_HTML.png

Fig. 2

Age-adjusted colon cancer deaths per 100,000 population by race/ethnicity, 2007–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig3_HTML.png

Fig. 3

New cases of diabetes among adults per 100,000 population by education level, 2008–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig4_HTML.png

Fig. 4

Stroke deaths (age adjusted) per 100,000 population by race/ethnicity, 2007–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig5_HTML.png

Fig. 5

Deaths from HIV infection per 100,000 population by race/ethnicity, 2007–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig6_HTML.png

Fig. 6

Percent of persons under age 65 with medical insurance by race/ethnicity, 2012–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig7_HTML.png

Fig. 7

Percent of persons under age 65 with prescription drug insurance by race/ethnicity, 2008–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig8_HTML.png

Fig. 8

Percent of persons unable to obtain needed medical care, dental care, or medications by educational attainment, 2007–2014. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig9_HTML.png

Fig. 9

Percent of adolescents (10–17 years) with a wellness checkup in the past 12 months by family income (percent poverty level), 2008–2016. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig10_HTML.png

Fig. 10

Percent of persons with a usual primary care provider by race/ethnicity, 2007–2014. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig11_HTML.png

Fig. 11

Percent of persons whose healthcare provider gives easy-to-understand instructions by educational attainment, 2013–2014. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig12_HTML.png

Fig. 12

Percent of persons whose healthcare provider gives easy-to-understand instructions by disability status, 2014. (Adapted from Healthy People 2020)

../images/438521_1_En_2_Chapter/438521_1_En_2_Fig13_HTML.png

Fig. 13

Percent of persons whose healthcare provider always showed respect for what they have to say by educational attainment, 2011–2014. (Adapted from Healthy People 2020)

Example population trends in health disparities for cervical cancer, colon cancer, diabetes, stroke, and HIV are displayed in Figs. 1, 2, 3, 4, and 5. These nationwide data demonstrate a consistent overall decrease in the burden of disease over the last decade. Racial and ethnic (Figs. 1, 2, 4, and 5) and educational disparities (Fig. 3) are persistent but showing some small improvement. Although not shown in the example figures, it is important to note that outcome disparities can vary widely by sex and gender as well as by other characteristics. The concept of intersectionality is further useful for understanding such differences.

Despite the fact that health-care delivery and health disparities are experienced at the local level, many of the case narratives in the following chapters have clear linkages to the national disparities data presented in the figures. For example, the first narrative in this volume, Time to Leave describes a woman’s experience with cervical cancer (Fig. 1).

In addition to health outcomes, there are clear and persistent disparities in health-care coverage (Fig. 6) and prescription drug coverage (Fig. 7). These gaps in coverage combined with rising health-care costs are no doubt related to the ongoing observed disparities in the decision to delay seeking important health services (e.g., Fig. 8). Disparities in usage of preventive health services exist for children as in Fig. 9 and adults (not shown); those with lower family income are far less likely to use preventive health services. Racial and ethnic minorities are also less likely to have a primary care clinician as a usual source of care (Fig. 10).

Perhaps most concerning are the health-care disparities. Examples of care disparities are displayed in Figs. 11, 12, and 13. In Fig. 11, there is a clear difference such that those with lower levels of education are less likely to report good communication with their health-care providers. Persons with higher levels of disability are also less likely to report that their health-care provider gives instructions that are easy to understand (Fig. 12). The disparities gap displayed in Fig. 13 is simply heartbreaking. Persons with lower levels of education are more likely to report thinking that their health-care providers do not respect them.

Health Disparities and Cultural Competency

Cultural competency is related to health disparities but is distinctly different. Many medical and educational intuitions have embraced education modules to educate staff and students about the importance of being aware of and respectful toward the cultural differences between individuals in the medical and educational environments, including patients, providers, ancillary staff, and even students. Cultural competency is a way of being that is sensitive to differences in culture among individuals (even when they share some cultural similarities—perhaps they’re both American—but also different, say an African American and an African Immigrant).

This is not an end-point driven concept, as in I am certified culturally competent, but is instead a process of continuous learning and adapting to different people so that one may effectively work with others from a variety of different backgrounds (Lawless et al. 2014). Learning about health